"Better information means better care?" - Don't be fooled.

[nolegion]

If you haven't already had an NHS leaflet entitled "Better information means better care" through your letterbox, you are likely to shortly.

 

In my view, it is a disgraceful document inadequately describing a disgraceful project. Here's an online version of it:-

http://www.england.nhs.uk/wp-content/uploads/2014/01/cd-leaflet-01-14.pdf

 

And here's s a well-written summary of the story so far, courtesy of the Independent,:-

http://www.independent.co.uk/life-style/health-and-families/health-news/your-life-in-their-hands-is-the-caredata-nhs-database-a-healthy-step-or-a-gross-invasion-of-patient-privacy-9042564.html

 

Timetable (according to Pulse, an online magazine for GPs, at 10 01 14):-

 

" Leaflets [without an opt-out form] will be delivered in four waves across different regions, starting with the North this week, followed by the Midlands and East, the South and London in subsequent weeks. Patients will have at least one month to read the leaflet and to register an objection with their practice, if they choose to opt out of sharing their data before the first planned extraction of data beginning in March."

 

The principal, and frankly urgent, point I wish to make is that if you wait to be told more about this by your GPs' practice you may wind up with very little time indeed to try to 'opt out' (so far as possible).

 

Secondly, a mere cursory glance at the leaflet might leave you assuming that the project is about joined-up medical information, potentially to the immediate and direct advantage of your own individual healthcare. It is nothing of the kind. It is about giving third parties, potentially hundreds or even thousands of them, not directly involved in your healthcare at all, access to highly personal information about you, now, frequently (probably monthly) and for ever.

 

And a large part of the project has been designed and will effectively be run by ATOS, the French IT and outsourcing company which has received so much criticism for its handling of benefits claims over recent years. (ref. e.g:

http://uk.atos.net/en-uk/home/your-business/healthcare/business-intelligence/gp-extraction-service.html)

 

Typically, there is also a catch in the apparent 'opt-out'. The newly-created 'Health and Social Care Information Centre' (HSCIC) is already storing personal, identifiable medical information about you – and will go on collecting the same from e.g. hospitals and community services, including mental health out-patient clinics; and there is apparently no way to opt out of that.

 

You can, however, stop the HSCIC giving third parties access to that information – and the way to do this is, oddly, through your GPs.

.

You thus have to tell your GPs:-

 

a) that you don't want any personal confidential details uploaded to HSCIC by the GPs themselves, and

b) that you don't want any personal confidential information shared by the HSCIC with anybody else at all, in any event.

 

When the computerised "data mining" raid ("GP Extraction Service") on your GP records begins, it is supposed to encounter prohibitory 'codes' (entered by your GPs) linked to your NHS number, date of birth, gender and postcode, effecting the required restrictions unless and until you should decide otherwise.

 

You are supposed to be able to give your instructions to your GPs orally – in person or on the phone. I have no faith in this as a route (even assuming you could get to speak to anyone who understood the project in the first place this side of next Christmas) and think it much better to write, preferably recorded delivery.

 

Possible text for such a letter might therefore include:-

 

" Please take whatever steps necessary to ensure my confidential personal information is not uploaded and record my dissent by whatever means possible.

 

This includes adding the ‘Dissent from secondary use of GP patient identifiable data’ code (Read v2: 9Nu0 or CVT3: XaZ89) to my record as well as the ‘Dissent from disclosure of personal confidential data by Health and Social Care Information Centre’ code (Read v2: 9Nu4 or CTV3: XaaVL).

 

I am aware of the implications of this request, understand that it will not affect the care I receive and will notify you should I change my mind. "

 

(Extracted from the very useful and informative:-

http://medconfidential.org/wp-content/uploads/2013/08/Opt_out_letter.pdf.)

 

A standardised opt-out form should, of course, have been included with the NHS leaflet, and also be available at all GP surgeries, right now. But that would have made it easy for patients to opt out, and it is disgraceful that the Department of Health\NHS England should, very deliberately, have made it more difficult and confusing for an entire nation-ful of NHS patients needing to respond within a very tight time-frame.

 

Finally, here's a selection of links for 'further reading':-

 

http://www.care-data.info/

 

http://bma.org.uk/practical-support-at-work/ethics/confidentiality-and-health-records/care-data

 

http://www.england.nhs.uk/ourwork/tsd/care-data/

 

http://www.england.nhs.uk/wp-content/uploads/2014/01/cd-patient-faqs.pdf

 

http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Documents/cd-pati-faqs-06012014%203.pdf

Edited January 11, 2014 by nolegion
Corrected link to Independent artcle

[nolegion]

The "better information"\'care.data' project has nothing to do with joined-up medical records directly benefiting individual patient care.

 

However, the multi-million pound NHS 'spine' project (i.e. eventually, centralised, total, computerised medical records for all) owed its calamitous failure to a number of factors, some of which will no doubt also apply to the, predictable, multi-million pound fiasco this will turn out to be ( incuding political duplicity, managerial incompetence and professional arrogance). Anyone want to bet that there won't be a serious, extensive breach of patient confidentiality as a result of 'care.data' before this year closes? - and a massive 'cost overrun' revealed thereafter?

 

Meanwhile, the further 'project' – to give patients full and immediate online access to their own medical records, which patients could, at their election, share with others if and to the extent they wished to do so - which, in my view, is where the 'thinking' should have started in the first place and could have been truly valuable - shows all the signs of being edged towards the long grass.

Edited January 12, 2014 by nolegion

[nolegion]

That figures. Clued-up patient meets clueless receptionist – the point, or one of them, being that NHS England is issuing over 20 million leaflets without an 'opt-out' form.

 

Not the receptionist's fault, of course. Inadequately briefed, and a pound to a penny she was confusing the situation with last year's possible 'opt out' from the 'summary care record' where 'forms' were indeed available.

 

Here's a further link which, amongst other things, is very specific as regards when one might expect to receive the leaflet.:-

 

http://www.england.nhs.uk/wp-content/uploads/2014/01/gp-update-note.pdf

[nolegion]

Exactly so.

 

In addition, I think it is deeply cynical of NHS England to say that it is taking care to offer the opt-out - "You have a choice" the leaflet says - and then to print over 20 million leaflets without an opt-out tear-off strip.

 

Further, what the leaflet carefully doesn't make clear is that if you don't opt out in full and by March, the data mining will go on monthly for ever, and extensive third-party access, including to confidential medcial information personally identifying individual patients, togethr with their postcodes, will thereafter be granted without further reference to the patients concerned.

 

See e.g:-

 

" Supporters of care.data have played down the prospect of identifiable patient data being shared as part of the scheme, and much of the debate to date has focused on the release of data which will be ‘pseudonymised’. NHS England is currently in the process of sending a leaflet to every household in the country which reassures patients that their ‘identity is protected’.

 

But Pulse’s analysis reveals that identifiable patient data is already being regularly approved for release by the NHS.

 

Under Section 251 of the NHS Act 2006, the health secretary is able to set aside patient confidentiality for ‘defined medical purposes’, but he has to take advice from the independent Confidential Advisory Group (CAG).

 

The CAG is based at the NHS Health Research Authority and assesses requests to see if there is a ‘sufficient justification’ to access confidential patient information.

 

A Pulse analysis of data published on the CAG website shows that in total 31 requests for identifiable patient data have been approved since April 2013.

 

In addition to this, at least 30 requests for identifiable data were ‘conditionally’ or ‘provisionally’ approved, as long as the applicant sought further approvals. Some 15 requests were rejected for lacking sufficient evidence.

 

 

The applications were mainly for commissioning or life science research, with information such as names, dates of birth, postcodes and NHS numbers requested alongside other medical data.

 

 

 

 

Approved applications include:

• A request from the University of Hertfordshire to access patient notes at six GP practices and pharmacies in order to review prescribing errors
  
• A request from the CQC for all the names and addresses of all adults who had one overnight hospital stay from June to August 2013
  
• A request from the Royal College of Anaesthetists for NHS number, hospital number and dates of birth and death for 40,000 patients who had an emergency laparotomy
  
• A request from Cardiff University for name, NHS number, date of birth, postcode and gender of all children presenting with a thermal injury "
  

(from an article in Pulse published online today: http://www.pulsetoday.co.uk/20005572.article)

Edited January 17, 2014 by nolegion

[nolegion]

" The whole process begins to undermine fundamentally the long established principle of patient confidentiality, and is a recipe for confusion," he said. “The NHS just seems to think patronisingly that all it needs to do is to throw in health-speak phrases such as “improve delivery”, “for the benefit of the service” and “in the public interest”, and people will just roll over and allow their data to be taken because it’s for their own good.

 

I have absolutely no faith in assertions by Government that patient data will be coded in such a way as to guarantee anonymity…There is also the Government’s record as a whole on data management or rather, chronic mismanagement and leakages. I believe that patients themselves, not NHS England, should determine when and where their own medical information is used and for what purposes."

 

(Roger Godsiff, MP)

 

http://www.pulsetoday.co.uk/your-practice/practice-topics/it/mp-tables-motion-to-halt-caredata-rollout-as-2400-patients-call-helpline/20005621.article

 

I would like to think there is enough growing hostility to the care,data project to halt it in its tracks – but frankly I doubt it. NHS England has deliberately put grossly inadequate information and too late, to boot.

 

The only safe thing to do is opt out as hard as possible.

Edited January 22, 2014 by nolegion

[nolegion]

"A substantial number of GPs are so uneasy about NHS England’s plans to share patient data that they intend to opt their own records out of the care.data scheme, reveals a Pulse snapshot survey.

 

The survey of nearly 400 GP respondents conducted this week found the profession split over whether to support the care.data scheme, with 41% saying they intend to opt-out, 43% saying they would not opt-out and 16% undecided.

 

The snapshot survey gives the first indication of GP opinion over the scheme, and comes as leaflets with information about the care.data programme are in the process of being sent to every household in England."

 

From:-

 

http://www.pulsetoday.co.uk/20005648.article

[nolegion]

The literature on this indicates that once the relevant 'codes' are entered into the record that opts the patient out forever.

 

Like the previous poster, though, I would certainly double-check this if I were to change practice any time soon, to avoid any possible 'misunderstanding '- and because this project has 'teething problems' written all over it.

 

Handing dcouments in at reception ought to work fine. I go for the bore and expense of recorded delivery postage solely on the off chance that the practice might one day wish to deny receipt. A hospital once did that to me with a hand-delivered subject acceess request under the Data Protection Act, and once bitten...

[nolegion]

Yes, Sali. that's how I understand it. One needs to instruct one's GPs both that you wish them not themselves to upload any personal medical details to the" health and social care information centre", AND that you don't want that centre to 'share' any details about you that they have already obtained or will obtain from other sources either.

 

When the data mining starts, progressively round the country from this March, the 'raiding program' run by Atos is then supposed to encounter two different codes linked to your personal details one of which will stop the upload of more than name, national health number d.o.b gender, and postcode from the GPs. The other, if entered by the GPs, will be linked to your outline data, and (in theory, at least) will then operate to instruct the HSCIC from further promulgation of your highly confidential medical details in the future.

 

If 'the raid' only enounters the first code, then the GP-based medical records will , supposedly, not be uploaded; but one will have failed to prevent the HSCIC from doing what he hell it likes with any other data it gets hold of about you - including on a totally 'un-anonymised' basis

 

This could all have been addressed by including a two-tick-box opt-out form with the 'information, leaflet'. NHS England is relying on people not understanding what is really required in order to declare the project a 'nationwide success' and 'supported by the vast majority of patients', no doubt . And that is a cynical, deceitful, bullying disgrace.

 

Of course, probably sooner rather than later, the IT side of the project will fall over, catastrophically and repeatedly, in any event - so no-one will know how much highly confidential information is where or how well 'protected', forever thereafter. And milions, even billions, of NHS money will have been poured down the drain.

[nolegion]

On second thoughts, it would be better to say the entire matter could have been addressed by a One-tick opt-out form. For who, deciding that they didn't want their GP records uploaded, would be likely to want to allow confidential medical details from other sources to be viewed by those not directly involved their medical care, anyway?

 

The 'dual opt- out' requirement is just another aspect of the confusion designed into the project to obstruct dissenting patients.

[nolegion]

Dr Gordon Gancz is clearly someone who has the courage of his convictions. Good man.

 

" A GP faces possible termination of his contract over his plan to opt all his patients out of NHS England’s flagship data-sharing scheme, Pulse can reveal.

 

Managers from Thames Valley area team have sent Oxford GP Dr Gordon Gancz a ‘notice of remediation’ to force him to remove any opt-out codes for care.data he had added without explicit patient consent, saying that he was in breach of his contract.

 

The notice - sent last week -also says that he must ‘remedy this breach’ by removing notices on his practicewebsite about his plan to opt all his patients out of the scheme.

 

Managers said that his actions were in breach of NHS England’s requirement that ‘patients will automaticallybe included unless they indicate to their practice that they wish to opt out’.

 

Dr Gancz now faces either taking the action specified in the letter, or potentially having his contract terminated."

 

From: Pulse:-

 

http://www.pulsetoday.co.uk/your-practice/practice-topics/it/gp-threatened-with-contract-notice-over-plan-to-opt-all-patients-out-of-caredata/20005749.article

 

The whole of the article is worth a quick read (and the comments appended).

[nolegion]

' One of the problems with the mailshot was that it didn't come with a simple opt out form for patients to fill in and hand to their GP practices to allow them to easily object to their medical records being shared within the NHS …

 

NHS data chief Tim Kelsey admitted today that the health service had failed to adequately inform patients about how they can opt out of having their GP medical records shared throughout England.

 

A leaflet carelessly posted out in among junk mail to 26.5 million households across the country was not "clear enough on the website or in the information that's been sent out [about] exactly what data is going to go and what is not going to go", the Information Commissioner Office's Dawn Monaghan told BBC Radio 4's Today programme this morning.

 

Kelsey said in response: "I think that maybe we haven't been clear enough about the opt-out, I agree with that." '

 

From:

 

http://www.theregister.co.uk/2014/02/04/care_data_medical_records_optout_not_clear_enough_admits_nhs_info_boss/

[nolegion]

It gets worse, HB.

 

Before starting this thread I telephoned the care.data "dedicated patient information line" (number in the "Better care" leaflet: 0300 456 3531), to ask, in particular, for more precise information about the 'opt-out(s)'.

 

It was quite a struggle to get the person I dealt with to acknowledge that there were, indeed, two components to the opting out. As discussed earlier, the first is about the uploading of information from the GPsrecords, the second about the sharing of information garnered by the HSCIC fromother sources, such as hospitals.

 

I was firmly assured that if opt-out 'part 1' was achieved, then NO data about me would be uploaded by my GPs. As regards 'part 2', yes, there would be a further 'code' entered into my records by the GPs in response to my specific instructions in this further regard - and I was equally firmly assured that that would operate to instruct the HSCIC not to share with third parties any other identifiable medical data it held about me.

 

Now, I'm sure you can see the problem there, even if it took a bit of time and patience , to get the 'dedicated helper' to see it. If part 1of my instructions worked to prevent ANY part of my medical record being uploaded to the HSCIC by GPs, how would the HSCIC ever know about 'part 2' of my instructions (lodged in my GP medical records)?

 

 

My 'helper' then said it must be the case that sufficient information to identify me as a patient would be uploaded from the GPs anyway, along with the opt out codes – but I needn't worry about that 'identification information' being linked by the HSCIC to my GP records because those records wouldn't be uploaded by virtue of my 'part 1' instructions. (An understanding I have reflected in e.g. post #16 above.)

 

I'm beginning to have even more serious doubts about the realities of the opt-out(s) - and the candour of the 'helpline' - but, in case it was me who had got the wrong end of the stick I rang it again this evening (they work out of hours I'm glad to say). I got exactly the same reluctance to acknowledge the opt-out complexities but exactly the same answer as regards GP records: opt-out ( part 1) prevents upload of your medical data by GPs. I was given vehement assurance on this point plus reference to the Data Protection Act, and confidentiality etc.

 

What made me think again is this extraordinary written answer to a parliamentary question which appeared in yesterday's Hansard:-

 

http://www.theyworkforyou.com/wrans/?id=2014-02-04a.185516.h&s=department%3AHealth

 

The question was carefully phrased but is met with a 'holding' (i.e self-confessedly incomplete) response which blatantly evades the question actually asked, and contains its own glaring self-contradiction in its first paragraph:-

 

"In terms of information which identifies a patient, NHS England's “Better information means better care” leaflet sets out how people can ask their GP practice to note their objections, which will prevent confidential, identifiable data about them being used by the care.data programme, other than in a very limited number of exceptional circumstances."

 

I see. And how exactly, in such exceptional circumstance, could the care.data programme 'use' GP-based confidential identifiable data about a patient which, because of the patients previously-registered objections, the care.data programme shouldn't possess in the first place?

 

I thought I might 'do a Columbo' and ring the helpline, yet again, with a 'just one more thing that puzzles me…' but I am a bit too tired, tonight.

 

Anyone else care to get some sense out of them? What exactly will be uploaded from GPs computerised records starting next month, even if you have registered all possible objections? It seems to me that neither the party line nor the help-line is being honest about this.

 

I think one could, to say the least, 'smell a rat' from the appallingly unclear text of the information leaflet and its failure to provide an opt-out form. It's now abundantly clear that MPs don't understand what is going on either. This project should be completely stopped in its tracks unless and until everyone is properly informed as to what is actually intended.

[nolegion]

Here's a pretty 'infographic' usefully published by Pulse.

 

http://cms.pulsetoday.co.uk/Uploads/2014/02/03/t/e/v/HowCareDataWorks-2.pdf

 

It shows the need for the two opt-outs. If you don't secure the 'purple blob' on the right (as well as the orange one on the left) then, down the line, completely identifiable personal medical information about you could be being viewed by whomsoever the government of the day wants to allow to see it.

 

From a different edition of the same magazine:-

 

"The information due to be extracted from GP systems in England for care.data includes family history, vaccinations,diagnoses, referrals, NHS prescriptions and biological values such as blood pressure and BMI. Identifiable information – NHS number, gender, postcode anddate of birth – is also included, to enable the Health and Social CareInformation Centre (HSCIC), which will initially hold the data, to match GPrecords to those from hospitals and elsewhere. Free text will not be included."

It is important to take on board the fact that, unless you are opted out on the GP side, the identifiable data raiding only starts over the next few weeks. It is planned that "the GP extraction service" (Atos) will go on conducting such raids every month, thereafter.

[nolegion]

So effectively there is no opt out 2?

 

There is certainly nothing in the literature or online which offers any way of preventing medical information from non-GP sources, together with details identifying the patient, from reaching the 'HSCIC'. Opt out 2 only prevents (or is at least supposed to prevent) the HSCIC from passing on the full 'identifiers' if or when it subsequently discloses the medical details to others.

 

 

Thank you annpow. Petition duly signed.

[nolegion]

Opt out 1

 

 

This is no doubt why the department of health refused properly to answer the parliamentary question referred to earlier:-

 

http://www.computing.co.uk/ctg/news/2327824/when-is-an-opt-out-not-an-opt-out-when-its-a-caredata-opt-out

 

We are being grossly, fraudulently, misled.

[nolegion]

" NHS England has announced it will delay its flagship data-sharing scheme for six months, to allow managers more time to ‘build understanding of the benefits’. NHS bosses said they would halt the planned extraction of data from GP surgeries in April and delay it until the autumn. "

 

From:

http://www.pulsetoday.co.uk/your-practice/practice-topics/it/nhs-england-unable-to-confirm-caredata-scheme-will-go-ahead-as-planned/20005896.article

 

Good. That's a start.

[nolegion]

Well, since I said a couple of weeks ago that:

 

" This project should be completely stopped in its tracks unless and until everyone is properly informed as to what is actually intended. "

 

I guess I cannot complain now that exactly that seems to have happened

.

However, I remain deeply sceptical about the project as a whole, and about whether truly accurate information will be supplied to patients in a thorough, candid and timely fashion - together with a genuine and easy 'opt-out' method.

 

Needs watching as by the proverbial hawk, and all further nuggets of info gladly received here.

 

Glad to hear your GPs are fully 'on-side', HB. We could do with more of those.

[nolegion]

Good point. Will they learn their lessons this time, I wonder

 

This afternoon's health select committee session investigating the "care.data" project has recently finished ( 2 hrs 50 mins).

 

Here's a link, but I am not sure how long these clips stay available (and just in case anyone hasn't watched one of these online before, be warned the first 30 seconds or so is often 'silent': do not adjust your set):-

 

http://www.parliamentlive.tv/Main/Player.aspx?meetingId=14949&wfs=true

 

I think many very important questions were asked - and one or two even got answered - but I was particularly keen to try to spot what might be raised about the Telegraph article SF alerted me to (post #33 above and the actuaries' document involved).

 

It came up more than once and was still being pursued in some of the last moments of discussion - specifically 02:43:20 to 02:48:42. More like continuing evasion than transparency, I think.

[nolegion]

For anyone still keeping an eye on the care.data fiasco, there was another Commons select committee inquiry about it earlier this week (08 04 14).

 

It seems to me that few decisions about any substantial changes to the proposed process have yet been made, and if they are still to go ahead next October (which was announced as planned when the fiasco came completely unstuck a few weeks ago), they will have had to do a considerable amount of further work, to avoid the same thing happening all over again.

 

A few points were clarified however. There will still be a two-item opt out, and:-

 

1. It is now apparently definite that if you notify your GPs that you elect for' opt out 1', NO confidential data from your GPs will be uploaded from your GPs' computerised records. (It appeared at one stage that this might not be the case – merely that your records would be 'pseudonymised' in the hands of the "Health and Social Care Information Centre", in a fashion that convinced absolutely nobody.)

 

2 As before, the second opt out will prevent confidential info grabbed from hospitals (which is already happening) being transferred, by the HSCIC, outside the NHS. This means that if the GP has entered the right code, your NHS number (but no other info) will be used to tell the HSCIC that you want this further option to apply.

 

There is, apparently, at least one more option for patients.

 

According the HSCIC at least, in the committee meeting, the (predominantly useless) 'NHS Constitution' (which isn't law) already allows a patient to tell hospitals that they don't want their medical records 'mined' by the HSCIC in the first place. Well, I have to say that's news to me. I have never heard of anyone being advised of this 'on site', nor of any hospital being organised to respond to such an instruction, if given.

 

I would be very interested to learn from anyone who is familiar with this particular point – or to be advised how they get on if the try it. I'm not hoping for a hospital admission any time soon, but if one arrives - and I am still conscious - I think I will give it a try, because I checked and the 'Constitution' (page 8) does indeed say;-

 

" You have the right to request that your confidential information is not used beyond your own care and treatment and to have your objections considered, and where your wishes cannot be followed, to be told the reasons including the legal basis."

 

(https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/170656/NHS_Constitution.pdf)

……………………………………………………………………………….

 

My favourite quote (from an MP interrogating the HSCIC people) was:-

 

" The big message out there is…if you want to protect yourself from a bunch of clowns, you need to opt out tomorrow. "

 

(at 00:48: 00 of:-

http://www.parliamentlive.tv/Main/Player.aspx?meetingId=15289)

[nolegion]

No, worried33. The care.data project was stopped in its tracks last February before any 'uploading' of data from GP surgeries had started. It is not due to be tried again (if they get their act together at all, and there is little sign of that yet - and then only on a very limited regional basis) until next October. You should get another, proper, chance to object to your practice, in, maybe, several months time.

 

As regards (non-professional) staff in surgeries\ hospitals etc and medical records, the usual story is that access is only made available on a strictly controlled basis and for necessary administrative reasons e.g. scanning paper documentation into electronic records, or printing out particular reports.

 

Patients are also told that all staff are in event 'bound by strict patient confidentiality', and that fierce audit-trails would expose any unauthorised access to computerised records etc.

 

Frankly, I have little faith in much of that actually being honoured in practice.

[nolegion]

" Health managers have admitted they have been unable to implement 700,000 patient opt-outs to GP data being shared, with GP leaders claiming that their admission demonstrates the ‘mess’ that the Government has created."

 

See yesterday's Pulse:-

 

http://www.pulsetoday.co.uk/your-practice/practice-topics/it/nhs-overriding-700000-patient-opt-outs-to-gp-data-being-shared/20009761.article

[nolegion]

"In September, GPs in pathfinder sites are due to start writing to patients about the care.data programme and six weeks after that data extracts could begin.

 

If it goes ahead, it will be the first substantive move for the project which aims to link patient data from GP record systems with hospital data for secondary uses.

 

The project is due to be tested in more than 100 pathfinder practices before wider roll-out. A total of 54 practices from Blackburn and Derwent and West Hampshire CCGs have signed up."

 

From:

http://www.gponline.com/gps-caredata-pilots-prepare-schemes-launch/article/1358393

(04 08 15)

 

 

If any forum contributor in the relevant areas gets a GP letter on this, it would be v. useful if they could post a copy online for examination.

[nolegion]

I think this lamentably-executed project will probably rear its head again early next year.

 

I found a link today (below) which refers to recent developments in the ongoing fiasco.

 

For any 'new viewers' a summary of the history to the current position as discussed in this thread, in my view, goes like this:-

 

1. The care.data" project which intended to collect personal data about all NHS patients from GP computer systems and then use it for purposes wholly outside any patient's control, fell over calamitously shortly after its January 2014 launch. Few were convinced that the 'anonymisation' of such data was secure, and many claimed there should have been an 'opt-in' as part of the process, rather than an opt-out - which 'NHS England' didn't even provide a 'slip' for in its 'promotional-junk' leaflet, in any event

 

2. Even as the initial fiasco ground itself to a swift and ignominious halt, by virtue of the failed attempt it became apparent to many who, like me, were previously unaware of it, that the 'Health and Social Care information Centre' (HSCIC) was already gathering personal data about patients from other healthcare providers e.g. hospitals and mental health Trusts, and flogging it to those wholly unrelated to any healthcare of the individual patients concerned – such as insurance companies.

 

3. Not surprisingly, so alerted, several hundred thousand patients considered the position and told their GPs that the didn't want the HSCIC to do any such thing - which, although rendered thoroughly obscure by the care.data 'promotional junk', was an option those patients were entitled to choose, irrespective of the failure of the proposed GP 'data extraction'. (Thank goodness for the net.)

 

NHS England thus not only failed to get the project off the ground, but shot itself in the foot on the runway.

 

4. It got worse. NHS England found itself unable to implement the instructions thus provoked and to stop the HSCIC processing the data it was already collecting, because of its managerial and technical incompetence – and, it is now said by the Information Commissioner's Office, because of lack of ministerial instruction.

 

See the latest, here:-

 

http://www.ukauthority.com/news/5832/caredata-cleared-for-patient-opt-out

[nolegion]

SF,

 

A. Yes. The HSCIC may well have 'shared' your (non-GP) medical records (albeit supposedly 'anonymised') with third parties not involved in your care, despite your specific instructions to the contrary. Indeed, it appears they may well go on doing so until some time in January (always assuming they actually get it right, even then).

 

Everyone seems satisfied, though, that no 'data-mining' of GP medical records themselves has taken place where patient prohibitions on this were in place.

 

B. Complaints. In fairness to GPs, there is nothing they have been able to do about the HSCIC\NHS ENGLAND\DoH behaviour. I know several GPs who are highly resentful of the way the whole process has been 'dumped' on them from above, compromising the trust of patients. The ICO would, in the first instance I have little doubt, merely refer you their toothless 'decision' the article refers to. The HSCIC responds to FOI requests, but I strongly suspect, will deny it's susceptible to DPA subject access requests and the like.

 

Break some ground on that last point, and let us know? Could be wrong. Other than that…your MP?

 

All further suggestions gratefully received. I suspect that all hell will break loose on this, again, early next year.

[nolegion]

‘1.2m patients continue to be ignored over objections to record sharing.’

 

http://www.pulsetoday.co.uk/your-practice/practice-topics/it/12m-patients-continue-to-be-ignored-over-objections-to-record-sharing/20031645.fullarticle

 

Jeepers.